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DiscussionComplex regional pain syndrome or reflex sympathetic dystrophy
Chronic Pain | Last Active: Oct 3, 2023 | Replies (185)Comment receiving replies
Replies to "Sorry janetpr, but I think your recommendation is careless and based on old school thinking of..."
@overwhelmed I'm so sorry you are going through this. I have RSD since 2012. I had a hip replacement and the surgeon cut my tibial, peraneal and sciatic nerves. I woke up screaming and with drop foot. I've been on methadone since then after getting a pain management Dr. Through my attorney. I was diagnosed by a neurologist with RSD. My pain management Dr is well known across the country for ketamine therapy. It works but you have to keep going back after the 5 days of treatment. I now after all this time can deal with the pain for a few months. There is no cure and no its not in your head however it can spread. I now have rotation to the hip in my left leg where it started and it has spread to my right foot and both hands. I too have tried to take my life with sleeping pills. It's not worth it. I want to live. I'm now in a wheelchair cuz I had the other hip replaced and almost 2 years later I got an infection that just wouldn't go away. I had 4 surgeries in the past 6 months. The infection has gone into the femur. My leg is 3 inches shorter than the other one which is useless. The hip has been completely removed after trying a spacer and numerous infections. Hence the wheelchair. I'm so sorry your husband is going through this with all the other problems you have. One other thing I won't get the spinal cord stimulator cuz I have a friend who did and the leads broke off and she had to have surgery again to remove it and get the leads out.. She got a new one put in and tells me that she is still in such terrible pain. Too close to the spinal cord for me. I wish you so much luck my dear. I know what you are going through with this disease. I pray your husband has a good recovery. God bless you both.
@overwhelmed, I am so very sorry you are suffering.
I don't think @janetpr meant it is "all in your head" as a "psychological" issue but rather the "physiological" process that takes place in the body with CRPS. Our brain is amazing but also complex, it drives the central nervous system throughout our entire body.
In CRPS, the brain makes pathways to the effected are of our body that is out of proportion to the injury which occurred. The new pathway send pain signals, in which we stop using that area, then glia cells (and free radicals) build up and the process continues, the brain keeps sending signals. By using the area, it is painful but can build a new pathway and tell the painful pathway there is no injury and try to reverse. In explaining it to others, I sometimes refer to phantom limb pain. The pain is very real, the brain is indeed sending pain signals, but out of proportion to what actually exists.
I am very open to both traditional, alternative, functional medicine and research the underlying scientific & physiologica basis for any treatment.
Nice lecture from Dr. Chopra at CRPS /RSD Conference.
My preteen daughter was diagnosed with CRPS (foot) and after weeks of sifting through medical research, abtracts, watching lectures and presentations, speaking with others I've personally come to conclusion for treating her. Build new pathways to the brain by desensitizing "moving & using" her foot. Relearning to walk again. It is a slow process, takes time and perseverance. It is also painful for her but she is improving. In fact, on days she isn't moving, the pain seems to be worse at night.
I am corresponding with other patients and parents of children w CRPS & CRPS patients all over the country and the world. Several are treating their children at Pediatric Pain Rehab Programs such as Boston's Children's, Nemours Orlando, Seattle Children's, Philly CHOP, etc. which 4-5 week daily programs 9-4p, outpatient. I believe there is a program for adults at Mayo. Still a long way to go and teaching her how to manage her disease and equipping her with tools in the future.
She is in outpatient physical therapy, PT at home ~ off crutches now but walking tip toe on her effected foot. Still painful but a little less and gaining function.
Not for everyone, but many patients respond to this treatment, retraining the brain and makes a new pathway to the brain regarding pain response.
Kind Regards.
my story is a mirror im on that ledge ill cya in a pain free world someday GB